A powerful journalist called me the second day of the New Year proposing we unite in the media and legislation to give CRPS a bigger stage.
When January 1st rolled around, I decided to take a couple of weeks off. But when I rolled out of bed on the 2nd, the flashing light on For Grace’s answering machine had another idea.
It was a message from a woman named Lane, a Health Editor of a foreign newspaper comparable to the New York Times. I wasn’t going to miss this golden media opportunity overseas and called her back without taking a beat. Boy oh boy, am I glad I did.
I immediately liked Lane – her passion, warmth, smarts, care and kindness, all this despite her high position. In my experience, these editors can be detached, even aloof. Not this gal. But why?
Lane came in full blast, talking about how much more awareness CRPS and Women In Pain need worldwide – and that she was just the journalist to get the job done with my support. That sounded great, but I couldn’t figure out where her drive came from.
That’s when Lane commented, “You probably know why I’m calling.” I had a guess, but I let her continue. “I was just diagnosed with CRPS – and when I read “Battle for Grace” I felt like I was reading my own story. Your book took me from suicide to hope. ” She also shared that she had a plan and pills to end her suffering before being inspired.
Pre-CRPS, Lane had a “perfect life.” She was an avid cyclist, had a happy marriage with two young children, lots of friends, a successful career with awards and accolades, and lived in her dream home on the water.
But a year ago, all of that came crashing down. A repetitive-motion injury led to unspeakable, burning pain in her hands that was quickly spreading to her feet. Her toes were curling under signaling possible future contractures.
After telling me about her career as a “campaigning” (in the US, “investigative” ) journalist where she’d never been willing to write about celebrities or anything trivial (yes!), along with having the ear of political elites in her country , I knew I wanted to work with this sparkplug of a woman.
Lane and I began talking on a regular basis. One day we shared a five-hour call that ran deep into the early morning for her. She couldn’t sleep due to pain and, setting journalism aside, intimately spoke to me about her family and friend’s cruelty since becoming ill.
Lane described her husband’s disbelief, her sister’s bullying, her friends disappearing, her kid’s not understanding and her mother, who she’d been close with, refusing to listen to her suffering. I realized Lane was not only battling level 10 pain, she was depressed.
Clearly Lane’s still in the crisis phase of CRPS. She can’t accept that she’s probably never going to be pain-free again and that her loved ones are either gone or tired of hearing about it. She’s hiding her diagnosis (working from home) from her higher-up’s, sharing “If they find out, I’ll be toast.” To top it off, she’s afraid that anything and everything she does will spread and worsen the disease.
That being said, unlike most newly diagnosed CRPS patients, Lane had spoken with all of the experts. Using her journalism savvy, she’d gotten the ear of leading researchers, doctors and scientists involved with the disease.
But these “experts” left her empty and hopeless. Besides finding a campaign partner, Lane called me to learn how I’d survived 32-years of CRPS and come out of it “unbroken.” I advised Lane to take on her “new normal” one hour at a time, that eventually acceptance would bring some healing. I encouraged her to get into a swimming pool and keep her body moving. I talked about the importance of staying connected with her passions and those things that give her positive life force. I urged Lane to find a psychologist to talk to about her loss, fear and grieving.
When she spoke of suicide again, I told her that we can fantasize about that as a way out, but it can never be an option. When she pushed, I sternly reminded Lane that her kids needed her.
I haven’t heard from Lane for a couple of weeks. She stopped calling and isn’t returning my emails. Lane mentioned that she was going to try a low-dose ketamine treatment, and perhaps this might explain her disappearance. But I’m worried. No, I’m more than worried.
The last thing my friend said to me was “it’s so dark where I am, Cynthia, and only you bring in the sun.” That’s what we long-termer’s can do for our newbie sisters in pain. Offer hope, guidance and wisdom they can get nowhere else. And that might be just enough for someone to carry on.
I hope you’re still out there, Lane, and that we team up as planned… to change the world of pain.